Improving end of life care for people with dementia

People with dementia are failing to get the end of life care that people with cancer receive, according to a leading academic.

Yet with one in three people over 65 now dying from dementia and with no cure on the horizon, good end of life care is paramount.

Currently around 850,000 people have dementia in the UK and this figure is expected to rise to one million by 2025, according to the Alzheimer’s Society.

Liz Sampson, Reader in the Marie Curie Palliative Care Research Department, Division of Psychiatry at University College London, believes that part of the problem is that “dementia is not recognised as a terminal illness. This is because many losses occur before death such as personhood, personality, autonomy and capacity. There is a much clearer pathway for people with cancer”.

Speaking at the Dementias 2016 conference held by MA Healthcare at the Royal College of General Practitioners, she said: “Most people with dementia will die in a care home so maybe all care homes should be adopting a palliative approach.

“In the media, palliative care is about putting people on the path to death, but it is active care.”

People with dementia should have 'full access to hospice care'

The National Council for Palliative Care has found that ‘although many palliative care services now care for people with conditions other than cancer, people with dementia are infrequently referred to, or cared for by, palliative care services’. It would like to see people with dementia having ‘full access to hospice care’.

Last December, the National Institute for Health and Care Excellence (NICE) issued new guidelines calling for a more individualised approach to end of life that is tailored to a person’s needs and wishes, rather than a ‘tick box approach’.

Dr Karen Harrison Dening, head of Research & Evaluation at Dementia UK and a specialist in end of life care, welcomed the guidance, saying it “should help ensure more people with dementia have access to good end of life care that is tailored to their individual needs and wishes.

Should be 'greater emphasis on training and education'

“Dementia is a complex condition that affects each individual differently and the needs and experiences of a person with dementia can differ from someone with another terminal condition. So it’s vital that their end of life care is compassionate and supports their specific needs, and those of their families. There now needs to be a greater emphasis on training and education to ensure this new guidance is put into practice effectively.”

She pointed out that many people with dementia may die of another co-morbid condition such as cancer or heart disease rather than their dementia so it is of utmost importance that their end of life care is tailored to meet such multiple and complex needs.

Managing pain

Alleviating pain is essential for good palliative care, however Dr Sampson carried out a study that showed some care home residents were living long-term with pain, pressure ulcers and eating problems.

She said: “It is important people are educated about the behavioural indicators of pain. This can include being aggressive and resistant to care. It can also make people quiet and withdrawn.

“It is important that we look at ways of managing pain without drugs as we would with people still living at home. People in care homes sometimes don’t have access to alternative therapies such as massage, physiotherapy and occupational therapy.

“When people with dementia are treated for pain, their anxiety levels reduce. Whenever I get a referral and they say a patient is being aggressive, I think do they have pain from being moved.”

A report in 2014 by Marie Curie and the Alzheimer's Society found that because so much of the focus is on living well with dementia, there is little focus on the experiences of people with dementia nearing the end of their lives.

The report chimed with Dr Sampson’s belief that because dementia is not often seen as a terminal diagnosis it can lead to poor access to care, inconsistent quality of care and inadequate pain management.

Phil McCarvill, head of policy and public affairs, at Marie Curie, said: “'End of life care for people with dementia remains a hidden aspect of health and social care in England so it is vital that we shine a light on the final stages of dementia to improve care and support for people and their families.”

Involve people with dementia in decision-making

Alzheimer’s Society recommends that people with dementia should be involved in decisions about end of life care wherever possible.

It claims that advanced planning for end of life care is vital because as dementia advances, in many cases capacity is lost and decisions need to be made on behalf of the person with dementia.

“A lot of care homes do advanced care planning. If it is done well it can be really useful,” said Dr Sampson. However she admits that it can be hard “as relatives are often keen to discuss palliative care but reluctant to put anything down on paper”.

The World Health Organisation describes palliative care as ‘the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families’.

Benefits of good palliative care

As well as good palliative care being best for the person with dementia, Dr Sampson has found that the more aggressive the care, the worse relatives will find the bereavement experience.

This applies to care home workers too who will often have established a strong bond with residents in the home.

“Care home staff experience grief too. They have often looked after the person who has died, for years.

“They can be traumatised by residents’ deaths but they don’t get the support the Marie Curie nurses and Macmillan nurses get,” said Dr Sampson.

The Gold Standards Framework was launched in 2004 to improve standards of end of life care in care homes. Since then the GSF training programme has been completed by over 2,500 care homes in England and Wales and the GSF accreditation has been achieved by 450 care homes.

Professor Thomas, who is national clinical lead for the National GSF Centre, would like to see end of life training being mandatory for all care homes, of which 80 per cent of their residents have some form of dementia.

GSF care homes have to attain a number of standards including the top four - that they have collaborated with GPs, that they have reduced their hospital admissions and deaths, that there is compassionate care for the dying and that they record advance care planning discussions for every resident.

Her dream is that one day all care homes will have the knowledge and skills to be able to encourage people to be well prepared so “When the time comes to die, dying is all that you have left to do”.